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Do You Need a Living Will?

The one chat every family should have.

Photo credit: Getty Images

Who Cares for the Caregiver?

I grew up in the 90s, before smartphones gave parents the luxury of having a private conversation via text message, without the kids being able to eavesdrop, or pick up another phone extension to listen in.

My mother's mother used to be an avid traveler, and as a kid, I eagerly looked forward to her souvenirs—especially when she and my grandpa returned from spending the winter in Florida, which always yielded the biggest present haul for my brother, sister and me.

In order to figure out my grandparents’ travel schedule (and when we could expect to cash in on some new toys), I'd listen in on the phone for the joke my mom would always crack whenever my grandmother was getting on a plane.

"The living will is in the underwear drawer, right?"

This was always followed by my grandmother's fake angry voice, laughter from both ends of the phone line and, eventually, my mother confirming the living will's true location—in the sock drawer to the left.

At the time, all this exchange meant to me was that Grandma and Grandpa were coming home soon. Looking back, it's a powerful example of using humor as a coping mechanism for one of the most uncomfortable, yet necessary, conversations there are.

A living will, as I later learned, is a document that guides your healthcare proxy or surrogate regarding how you would like certain medical decisions to be handled in the event that you're unable to communicate them yourself. It particularly addresses how you feel about artificial hydration and nutrition. Being kept alive by machines was a fate my grandma feared—which she made known to her family whenever the opportunity presented itself.

In middle school, I remember watching the news with my mom and grandma and seeing a story about a woman whose brain was no longer functioning. Her husband wanted to pull the plug and her parents didn't. Both sides argued that they knew what the woman would have wanted. But without any formal paperwork in place, the path to a decision was anything but straightforward.

Using current events to spark conversation with your loved ones about your last wishes is a tactic that Adam Kahn, an attorney and senior fellow for the Gitenstein Institute for Health Law and Policy at Maurice A. Deane School of Law, recommends in his work with The Chat Project, a partnership between the Gitenstein Institute and Northwell Health, that is dedicated to educating the public on advanced care planning.

“At the time, all this exchange meant to me was that Grandma and Grandpa were coming home soon. Looking back, it's a powerful example of using humor as a coping mechanism for one of the most uncomfortable, yet necessary, conversations there are.”
Danielle Page, writer

"For example, maybe something comes up in a TV show where somebody has to make a medical decision for somebody else," he says. "That might be an opportunity to turn and say, 'If I were in this position, this is what I would want.’  The living will memorializes wishes concerning end of life care, and having a conversation about those wishes serves to make them clear to family members.”

It was important for my grandmother to make it known, both on paper and to her family, what she wanted in case there came a day when she couldn't tell us. She was only in her 60s when she drafted her living will, but because she traveled so often, she wanted to make her wishes clear, just in case. She chose my mother to carry it out. This person should be chosen carefully, according to Dr. Maria Carney, chief for the Division of Geriatrics and Palliative Medicine at Northwell Health, and should be strategic.

"Make sure you’re selecting someone who knows what your goals are, who will advocate for what you want," she says, "even if they don't agree with them." Even if everyone in your family is well aware of where to find your living will—to the point that the conversation becomes a running joke—Dr. Carney says having extras is still a smart move. "Have multiple copies for multiple people so that you always know where it is," she suggests.

My grandmother has four children--my mom being the oldest. When choosing who she'd trust with the living will, she went with who she knew would be able to do what she wanted.

"Everybody who has kids knows they're all so different," my mom told me. "You try to pick the one who's going to carry out your wishes. It's not a matter of who's better or who's not."

"Plus, your Aunt Doreen would probably stuff me and ride around in the car with me if she could," my grandmother joked.

That sense of humor, my mom says, made talking about my grandma's last wishes much easier. "It's a hard conversation to have," she told me. "Nobody wants to think about it, but certain things have to be in place if you're going to go out of this world the way you want to."

As my grandmother nears 81, everything is in place in her living will, which is placed neatly in the sock drawer where it has been for the past few decades. And when it comes time to make tough calls about her health, my mom feels prepared.

"No one would be able to change my mind about this,” my mom told me, “because she's been so adamant over the years about what she wants.”

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Published October 16th, 2018

Who Cares for the Caregiver?